Since my December 2, 2005 Non-Hodgkin Lymphoma diagnosis, I've been on a slow-motion journey of survivorship. Chemo wiped out my aggressive disease in May, 2006, but an indolent variety is still lurking. I had my thyroid removed due to papillary thyroid cancer in 2011, and was diagnosed with recurrent thyroid cancer in 2017. Join me for a survivor's reflections on life, death, faith, politics, the Bible and everything else. DISCLAIMER: I’m not a doctor, so don't look here for medical advice.

Wednesday, January 04, 2006

January 3, 2006 - Second Opinion

Today is my long-awaited appointment with Dr. Carol Portlock at the Memorial Sloan-Kettering Cancer Center in New York City. Not only is it my first time visiting Sloan-Kettering, it's also the first time I've driven in the city for years. Whenever we go into Manhattan, we typically take the train and the subway, to avoid playing bumper-car with the cabbies. But today we must carry the large, poster-sized envelope containing my diagnostic films, as well as the fragile, bubble-wrapped package containing the tissue samples, so we opt to drive. And besides, with the uncertain timing of subway transfers on an unfamiliar route, we want to be sure of being there on time.

Despite terrible weather (high winds and pelting rain from a Nor'easter), our mid-day trip into the city goes smoothly enough. Claire and I arrive at the hospital 45 minutes early and find the parking garage. Walking through the maze of corridors, eventually we find Outpatient Registration. Everything's electronic at Sloan-Kettering: no paper forms to sign, just a stylus and a computer screen. Even though this is just a second-opinion visit, I am given a permanent hospital ID card, resembling a plastic credit card: a membership card for yet another club I never asked to join.

We sit in the waiting room outside Dr. Portlock's office for more than an hour past our scheduled time. I half-expected this, because I knew it would take some time for my diagnostic films and pathology slides to be reviewed. This delay is a good thing, I keep saying to myself. Take all the time you need, Doctor. Don't rush things. Finally, we're called into an examining room. We sit awhile, then a nurse comes in and silently but efficiently takes my vital signs. A little more waiting, then a "fellow" (a doctor-in-training) comes in and examines me, taking a thorough medical history. He confirms what Dr. Lerner has been telling me: considering my early diagnosis and lack of symptoms, there is reason for optimism. He also tells me that my hemoglobin level – reported as 16 on my most recent blood test – is superb. Many NHL patients he sees at Sloan-Kettering are much lower than that. Finally, Dr. Portlock herself comes in, and after a brief physical examination, invites us to join her and the other doctor across the hall in a consulting room (a small, sparsely-furnished office, equipped with a desk and a backlighted wall display for examining x-ray and other diagnostic scans).

Sitting across the desk from us, with her colleague by her side, Dr. Portlock confirms Dr. Lerner's diagnosis: follicular center cell NHL, an indolent form of the disease. The diagnosis was a little difficult to make, she says, because the sample from my core-needle biopsy was so small. It's not so much that the overall amount of tissue was small, she says, but a large portion of the sample is scar tissue rather than malignant cells. This is fairly common in an indolent cancer, she says, because the scar tissue is the by-product of the body's past efforts to fight off the cancerous cells.

Dr. Portlock is not so quick as Dr. Lerner to suggest chemotherapy. Yes, chemotherapy is an option, in her opinion, but it's probably not the best option at this point in time. My disease has been caught early, and were it not for the large size of the mass in my abdomen, the best strategy might even be "watch and wait" (doing nothing, essentially, just monitoring the growth of my tumors with regular CT scans). Because of the size of the largest mass, Dr. Portlock suggests treatment, but with Rituxan alone – holding chemotherapy in reserve for possible use in the future.

This advice does not come as a complete surprise. The things I have been learning about indolent forms of NHL – both from my conversations with Dr. Lerner and from my reading and web-crawling – suggest that indolent NHL is very different from most other forms of cancer.

A fundamental change in perspective is necessary for those who have this disease. Most of us are naturally inclined, when we first learn of our diagnosis, to go after the cancer aggressively: blasting out all traces of malignancies, whatever it takes. No price – weakness, hair loss, nausea – is too high, to achieve the peace of mind of being declared cancer-free. Yet this aggressive approach is often futile, because indolent NHL is incurable. No matter how aggressive the chemotherapy regimen, there are always some cancerous cells that escape the chemical fusillade. Eventually they begin to replicate again. According to the latest thinking of NHL experts, the goal is not only to put patients into remission (which is not all that difficult to achieve on the first go-round, especially with the miracle drug Rituxan), but more importantly to manage the remission so it lasts as long as possible. Some chemotherapy regimens are so harsh, they can only be given once in a lifetime: better to begin the battle with the small arms first, and keep the big guns in reserve for later. (That's one school of thought, anyway.)

This is why the decision as to the first treatment is so critical: decisions made now will influence what weapons still remain in the treatment arsenal years down the road.Rituxan, one of the newer medicines in the arsenal, is often given along with chemotherapy in treating NHL. The success rate of this one-two punch is indeed impressive. Yet in patients with indolent NHL, treatment with Rituxan alone appears to yield similar results in many cases. Because of the slow progress of the disease, increasing numbers of doctors – concluding that their patients have the luxury of time – are recommending Rituxan alone as the first line of defense.

I ask Dr. Portlock about staging: having examined the films and slides, how far advanced is my disease? The answer, she tells us, is Stage III (out of a possible four stages). Not only does the PET scan image show several enlarged lymph nodes scattered throughout my abdominal region, but there are also a couple to the north of the diaphragm, including one in my armpit. But don't worry too much about the staging, she is quick to add. Lymphoma, by definition, affects the entire lymphatic system, so it's not unusual for the disease to show up in numerous locations throughout the body.

As I think later of how to describe this, an analogy comes to my mind: that of a car chase in some action film. The police are chasing a criminal through the city streets, when they see the criminal's highly-tuned sportscar ascend an expressway entrance ramp. This is bad news for the cops, because it means the chase has just been ratcheted up to a whole new level. The villain will now be able to travel much faster and farther than before. This is similar to what happens when a cancer metastasizes from some localized tumor onto the lymphatic-system expressway. The cancer is making a break for it.

Yet indolent NHL is different. Sure, the crooks have made it onto the expressway – in fact, because this is a lymphatic cancer, they've never been driving anywhere else. Yet the difference with indolent NHL is that these inept criminals are puttering along, on the shoulder of the road, in a beat-up old dump truck that can't go faster than 40 m.p.h. That hulking old behemoth of a truck has such inertia that it's all but impossible for the cops to pull it over, but at least it's not moving very fast. This is going to be one of those drawn-out, slow-motion car chases: O.J. Simpson's white Bronco on the traffic-choked California freeways, rather than James Bond's Aston-Martin roaring down the Autobahn. Careful, deliberate strategy will be the key to success – looking far down the road to see what lies ahead, and planning accordingly.

That's the way it seems to me, anyway, as I try to make sense of all this esoteric medical knowledge. (This analogy of mine comes with the disclaimer that it reflects my thinking only, and should in no way be regarded as medically authoritative. My Ph.D. is in theology, not biology; so caveat emptor.)

There is yet another treatment option, Dr. Portlock goes on to tell us, one that can be combined with Rituxan. She suggests that I could possibly be eligible for a clinical trial now being conducted by one of her colleagues at Sloan-Kettering, Dr. Paul Hamlin. This is a treatment that could present certain "difficulties" for me, from the standpoint of what I would have to go through, but it's very promising.

Are you speaking of idiopathic vaccine therapy, I ask her? Yes, she says – a little surprised, I think, that I came up with that term. Dr. Lerner had first mentioned it to me, in passing, at the time of my diagnosis, and I had later read on the internet about this particular clinical trial, now being conducted all over the country by the drug's manufacturer. Sloan-Kettering is one several dozen research centers conducting the study.

A whole new approach to treating cancer, idiopathic vaccine therapy involves taking a biopsy from the patient's cancerous tissue and sending it off to a lab. In the lab, a customized vaccine is made, using the patient's own cells, which is then injected back into the patient over a period of many months. The vaccine inspires the patient's own immune system to rally and fight off the disease. This technologically-advanced treatment is the product of rapid developments in the field of microbiology, as new knowledge of the human genome has allowed scientists to manipulate the genes of cancer cells, to transform them into cancer-fighters.

This treatment is so new, it's not yet readily available. Right now, this clinical trial is the only place to get it. Even then, as Dr. Portlock tells me, I would only have a 50% chance of getting the real vaccine, at least at first: because this is a research study, half the patients get a placebo instead. All patients in the study get four initial doses of Rituxan, which is known to be effective against NHL. Everyone also gets (by injection, on a more-or-less monthly basis) another medication that stimulates the immune system – but only half the test subjects, randomly selected, get the vaccine along with these injections. The company makes custom-made doses of the vaccine for everyone, but in the case of those who receive the placebo, the vaccine is held in reserve as the patients are carefully watched, receiving CT scans every few months. When growing tumors again appear on the scans, months or even years later (indicating that the period of remission is ended), then those in the placebo half of the study will get their vaccine – later than the others, but still in time to be effective.

The "difficulties" Dr. Portlock is referring to are, first, that I would need to go back to the operating room for another biopsy of my abdominal mass – probably a laparoscopic surgical procedure this time, rather than a core-needle biopsy (so as to harvest enough tissue for the drug makers to use in manufacturing the vaccine). Second, while Dr. Lerner could probably administer my Rituxan treatments locally, I would need to travel to Sloan-Kettering on a monthly basis to receive the vaccine injections. Considering that I would be avoiding the side effects of chemotherapy, it sounds like a pretty even exchange to me.

The ethics of clinical trials are complex. Why give a patient a placebo, common sense cries out, while the real medicine sits on a shelf in some laboratory? There are several answers to such a question. First, the patients in such a study are fully informed of the possibility they may get a placebo, and voluntarily choose to go through with it. Second, the medicine that is being withheld is not yet thoroughly tested. It's not available to anyone right now, apart from the clinical trial – so those lucky enough to be in the 50% who get the vaccine are receiving something they could not get in any other way. Third, this study includes Rituxan for everyone, which is known to be effective – and which, in an indolent cancer like mine, could well be the only treatment I start with, anyway. So, the placebo group is not going untreated. They're just not getting the particular medicine that is the focus of the study.

This is shaping up to be a complicated and very interesting choice (the choice would also be dependent on whether Dr. Hamlin considers me to be a good test subject). I’ll have to see what Dr. Lerner thinks of all this, of course – whether, after speaking with Dr. Portlock, he’s on the same page in recommending Rituxan alone as the first line of defense, rather than chemotherapy. My appointment with him is on January 13th. Between now and then, there is much to think about.

2 comments:

Barbara Carreira
said...

I rec'd Rituxan the day before I started my chemo. My tumor had been blocking my pulmonary artery & I had difficulty breathing. Just hours after my Rituxan treatment, I could already breathe much more easily. The doctor was amazed. It sounds like I had a more aggressive form - but hopefully you'll have just as good results.

I have an article I saved from the Asbury Park Press last year re: Bexxar. (This may be the vaccine you wrote of, I'm not sure). If you'd like a copy of the article, I'd be glad to mail it to you. You could e-mail me your address or the church's address. I'm at:pikebaybarb@aol.com. Keep the faith and live strong!

I rec'd Rituxan the day before I started my chemo. My tumor had been blocking my pulmonary artery & I had difficulty breathing. Just hours after my Rituxan treatment, I could already breathe much more easily. The doctor was amazed. It sounds like I had a more aggressive form - but hopefully you'll have just as good results.

I have an article I save from the Asbury Park Press last year re: Bexxar. (This may be the vaccine you wrote of, I'm not sure). If you'd like a copy of the article, I'd be glad to mail it to you. You could e-mail me your address or the church's address. I'm at:pikebaybarb@aol.com. Keep the faith and live strong!

About Me

I am Pastor of the Lamington Presbyterian Church in Bedminster, New Jersey. From time to time I teach Presbyterian Polity at Princeton Theological Seminary and Presbyterian Studies at New Brunswick Theological Seminary. I am married to the Rev. Claire Pula, Director of the Bereavement Program, Hackensack Meridian Hospice in Wall, NJ. We have two children: Benjamin, a singer-songwriter, and Ania, an artist.